The Your Rheum story: involvement of young people in rheumatology research

Abstract Until recently, young people too often fell into the gaps between services due to restrictive age criteria. Furthermore, their voice was too infrequently heard or was represented by proxies in the form of their caregivers or by adults recalling their youth. The lack of young person involvem...
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Autor*in:	Esen, Ecem [verfasserIn] Gnanenthiran, Suruthi Lunt, Laura McDonagh, Janet E.

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2022

Schlagwörter:	Adolescent Young adult Young people Research involvement Rheumatology Research participation Developmentally appropriate Peer support

Anmerkung:	© The Author(s) 2022

Übergeordnetes Werk:	Enthalten in: BMC Rheumatology - London : BioMed Central, 2017, 6(2022), 1 vom: 05. Juli
Übergeordnetes Werk:	volume:6 ; year:2022 ; number:1 ; day:05 ; month:07

Links:	Volltext

DOI / URN:	10.1186/s41927-022-00273-z

Katalog-ID:	SPR05082855X

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spelling	10.1186/s41927-022-00273-z doi (DE-627)SPR05082855X (SPR)s41927-022-00273-z-e DE-627 ger DE-627 rakwb eng Esen, Ecem verfasserin aut The Your Rheum story: involvement of young people in rheumatology research 2022 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2022 Abstract Until recently, young people too often fell into the gaps between services due to restrictive age criteria. Furthermore, their voice was too infrequently heard or was represented by proxies in the form of their caregivers or by adults recalling their youth. The lack of young person involvement in adolescent health research including the arena of paediatric and adolescent chronic disease has been highlighted in current literature. However, the involvement of young people at all stages of health research, from priority setting through to dissemination, is widely advocated. Furthermore, such involvement is considered to be important ethically and, most important of all, has been called for by young people themselves. Young people have clear views about research and these views potentially enhance our understanding of how young people form opinions about research. These opinions in turn informs researchers how to best engage young people (including recruitment and retention) in research. Such involvement of young people ensures that research questions, project methodologies and/or interventions are truly resonant with their lives. This paper describes the development of a national youth advisory group in UK rheumatology, an important addition to the evolving evidence base to support the involvement of young people in rheumatology research. The paper is written with two young people who are members of this group, providing them with an opportunity to learn more about a key component of research—writing papers for publication. Adolescent (dpeaa)DE-He213 Young adult (dpeaa)DE-He213 Young people (dpeaa)DE-He213 Research involvement (dpeaa)DE-He213 Rheumatology (dpeaa)DE-He213 Research participation (dpeaa)DE-He213 Developmentally appropriate (dpeaa)DE-He213 Peer support (dpeaa)DE-He213 Gnanenthiran, Suruthi aut Lunt, Laura aut McDonagh, Janet E. (orcid)0000-0002-4555-7270 aut Enthalten in BMC Rheumatology London : BioMed Central, 2017 6(2022), 1 vom: 05. Juli (DE-627)1011826712 (DE-600)2918121-5 2520-1026 nnns volume:6 year:2022 number:1 day:05 month:07 https://dx.doi.org/10.1186/s41927-022-00273-z kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 6 2022 1 05 07
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language	English
source	Enthalten in BMC Rheumatology 6(2022), 1 vom: 05. Juli volume:6 year:2022 number:1 day:05 month:07
sourceStr	Enthalten in BMC Rheumatology 6(2022), 1 vom: 05. Juli volume:6 year:2022 number:1 day:05 month:07
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topic_facet	Adolescent Young adult Young people Research involvement Rheumatology Research participation Developmentally appropriate Peer support
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container_title	BMC Rheumatology
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spellingShingle	Esen, Ecem misc Adolescent misc Young adult misc Young people misc Research involvement misc Rheumatology misc Research participation misc Developmentally appropriate misc Peer support The Your Rheum story: involvement of young people in rheumatology research
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topic_title	The Your Rheum story: involvement of young people in rheumatology research Adolescent (dpeaa)DE-He213 Young adult (dpeaa)DE-He213 Young people (dpeaa)DE-He213 Research involvement (dpeaa)DE-He213 Rheumatology (dpeaa)DE-He213 Research participation (dpeaa)DE-He213 Developmentally appropriate (dpeaa)DE-He213 Peer support (dpeaa)DE-He213
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title	The Your Rheum story: involvement of young people in rheumatology research
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title_full	The Your Rheum story: involvement of young people in rheumatology research
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title_sort	your rheum story: involvement of young people in rheumatology research
title_auth	The Your Rheum story: involvement of young people in rheumatology research
abstract	Abstract Until recently, young people too often fell into the gaps between services due to restrictive age criteria. Furthermore, their voice was too infrequently heard or was represented by proxies in the form of their caregivers or by adults recalling their youth. The lack of young person involvement in adolescent health research including the arena of paediatric and adolescent chronic disease has been highlighted in current literature. However, the involvement of young people at all stages of health research, from priority setting through to dissemination, is widely advocated. Furthermore, such involvement is considered to be important ethically and, most important of all, has been called for by young people themselves. Young people have clear views about research and these views potentially enhance our understanding of how young people form opinions about research. These opinions in turn informs researchers how to best engage young people (including recruitment and retention) in research. Such involvement of young people ensures that research questions, project methodologies and/or interventions are truly resonant with their lives. This paper describes the development of a national youth advisory group in UK rheumatology, an important addition to the evolving evidence base to support the involvement of young people in rheumatology research. The paper is written with two young people who are members of this group, providing them with an opportunity to learn more about a key component of research—writing papers for publication. © The Author(s) 2022
abstractGer	Abstract Until recently, young people too often fell into the gaps between services due to restrictive age criteria. Furthermore, their voice was too infrequently heard or was represented by proxies in the form of their caregivers or by adults recalling their youth. The lack of young person involvement in adolescent health research including the arena of paediatric and adolescent chronic disease has been highlighted in current literature. However, the involvement of young people at all stages of health research, from priority setting through to dissemination, is widely advocated. Furthermore, such involvement is considered to be important ethically and, most important of all, has been called for by young people themselves. Young people have clear views about research and these views potentially enhance our understanding of how young people form opinions about research. These opinions in turn informs researchers how to best engage young people (including recruitment and retention) in research. Such involvement of young people ensures that research questions, project methodologies and/or interventions are truly resonant with their lives. This paper describes the development of a national youth advisory group in UK rheumatology, an important addition to the evolving evidence base to support the involvement of young people in rheumatology research. The paper is written with two young people who are members of this group, providing them with an opportunity to learn more about a key component of research—writing papers for publication. © The Author(s) 2022
abstract_unstemmed	Abstract Until recently, young people too often fell into the gaps between services due to restrictive age criteria. Furthermore, their voice was too infrequently heard or was represented by proxies in the form of their caregivers or by adults recalling their youth. The lack of young person involvement in adolescent health research including the arena of paediatric and adolescent chronic disease has been highlighted in current literature. However, the involvement of young people at all stages of health research, from priority setting through to dissemination, is widely advocated. Furthermore, such involvement is considered to be important ethically and, most important of all, has been called for by young people themselves. Young people have clear views about research and these views potentially enhance our understanding of how young people form opinions about research. These opinions in turn informs researchers how to best engage young people (including recruitment and retention) in research. Such involvement of young people ensures that research questions, project methodologies and/or interventions are truly resonant with their lives. This paper describes the development of a national youth advisory group in UK rheumatology, an important addition to the evolving evidence base to support the involvement of young people in rheumatology research. The paper is written with two young people who are members of this group, providing them with an opportunity to learn more about a key component of research—writing papers for publication. © The Author(s) 2022
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title_short	The Your Rheum story: involvement of young people in rheumatology research
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